Genetic Governance

Ethical and practical issues around genetic research are of major international concern, both in academia and in the public domain. Questions concerning what interventions are possible and appropriate with the increasing amount of genetic information available, challenge our understandings of ourselves, our health and wellbeing, and the role of medical ethics, public health, surveillance and risk. However there has been little reflection on the socio-political effects of this new genetic knowledge and the changes in practice that are currently impacting on our lives. Containing contributions from key international researchers, this book examines the broader issues of genetic debates and looks at how prediction and risk assessment is being changed in the arenas of health, medicine and reproduction, bringing new insight on the dangers of surveillance, regulation and increased inequality. Developed out of the Taylor and Francis journal Critical Public Health, the book considers the implications of developments in genetics for contemporary liberal governance, as well as for the future of healthcare and public health.

Cover -- Half Title -- Title Page -- Copyright Page -- Contents -- List of figures and tables -- List of acronyms -- Acknowledgements -- 1 Introduction -- 2 Regime complexity and institutional change -- 3 Genetic resources and biotechnology -- 4 Property regimes -- 5 Plant genetic resources for food and agriculture -- 6 Biopiracy -- 7 Viral genetic resources -- 8 Marine genetic resources -- 9 Conclusions -- Bibliography -- Index.

This volume suggests alternative ethical frameworks and models of regulation relating to the governance of genetic information.

Original and interdisciplinary, this is the first book to explore the relationship between a neoliberal mode of governance and the so-called genetic revolution. Looking at the knowledge-power relations in the post-genomic era and addressing the pressing issues of genetic privacy and discrimination in the context of neoliberal governance, this book demonstrates and explains the mechanisms of mutual production between biotechnology and cultural, political, economic and legal frameworks. In the first part Antoinette Rouvroy explores the social, political and economic conditions and consequences of this new ‘perceptual regime’. In the second she pursues her analysis through a consideration of the impact of ‘geneticization’ on political support of the welfare state and on the operation of private health and life insurances. Genetics and neoliberalism, she argues, are complicit in fostering the belief that social and economic patterns have a fixed nature beyond the reach of democratic deliberation, whilst the characteristics of individuals are unusually plastic, and within the scope of individual choice and responsibility. This book will be of interest to all students of law, sociology and politics.

Multi-institutional governance architectures are increasingly common in world politics, yet how do they evolve over time? This book develops a fresh conceptual approach by distinguishing two main types of institutional change and by proposing the strategic context within which governments make decisions regarding international cooperation as the main driving factor. Applying this theoretical framework to the case of genetic resources, it shows how the scope for change has persistently been circumscribed by asymmetries in the global biotechnology sector. Taking a broad view of the underlying technological, legal and economic factors, the book analyzes the formation of international regimes linking access to genetic resources to the fair and equitable sharing of the benefits arising out of their utilization. Covering negotiations in the areas of seeds, intellectual property rights, pandemic influenza viruses and marine genetic resources, the author shows how governments have persistently faced the problem of ensuring cooperation among actors with widely differing interests. This led them to opt for a strategy of institutional layering, whereby new international instruments are gradually built upon pre-existing ones. In addition to giving a comprehensive overview of the international governance of Access and Benefit-sharing within the wider context of modern biotechnology, the argument developed here enables a new perspective for studying institutional change in multi-institutional governance architectures.

Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.

This timely study will be of interest to students and academics concerned with the management of genetic resources and its connection to issues such as intellectual property rights, biodiversity conservation and food security. It will appeal strongly t

Genome editing is a powerful new tool for making precise alterations to an organism's genetic material. Recent scientific advances have made genome editing more efficient, precise, and flexible than ever before. These advances have spurred an explosion of interest from around the globe in the possible ways in which genome editing can improve human health. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions. Human Genome Editing considers important questions about the human application of genome editing including: balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. This report proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.